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U.S. Department of Health and Human Services

Assistant Secretary for Planning and Evaluation

Office of Disability, Aging and Long-Term Care Policy

FOSTER CARE FOR

C

HILDREN AND ADULTS

WITH HANDICAPS:

CHILD WELFARE AND ADULT SOCIAL

SERVICES FINAL REPORT

October 1987

Office of the Assistant Secretary for Planning and Evaluation

The Office of the Assistant Secretary

for Planning and Evaluation (ASPE) is the principal advisor to the Secretary of the Department of Health and Human Services (HHS) on policy development issues, and is responsible for major activities in the areas of legislative and budget development, strategic planning, policy research and evaluation, and economic analysis. ASPE develops or reviews issues from the viewpoint of the Secretary, providing a perspective that is broader in scope than the specific focus of the various operating agencies. ASPE also works closely with the HHS operating divisions. It assists these agencies in developing policies, and planning policy research, evaluation and data collection within broad HHS and administration initiatives. ASPE often serves a coordinating role for crosscutting policy and administrative activities. ASPE plans and conducts evaluations and research--both in-house and through support of projects by external researchers--of current and proposed programs and topics of particular interest to the Secretary, the Administration and the Congress. Office of Disability, Aging and Long-Term Care Policy The Office of Disability, Aging and Long-Term Care Policy (DALTCP), within ASPE, is responsible for the developmen t, coordination, analysis, research and evaluation of HHS policies and programs which support the independence, health and long-term care of persons with disabilities--children, working aging adults, and older persons. DALTCP is also responsible for policy coordination and research to promote the economic and social well-being of the elderly. In particular, DALTCP addresses policies concerning: nursing home and community- based services, informal caregiving, the integration of acute and long-term care, Medicare post-acute services and home care, managed care for people with disabilities, long-term rehabilitation services, children's disability, and linkages between employment and health policies. These activities are carried out through policy planning, policy and program analysis, regulatory reviews, formulation of legislative proposals, policy research, evaluation and data planning. This report was prepared under grant #90DD0051/2 between HHS's Office of Social Services Policy (now DALTCP) and the University of Minnesota. Additional funds were provided by the HHS Administration on Developmental Disabilities. For additional information about this subject, you can visit the DALTCP home page at tcp.cfm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The Project Officer was Margaret Porter.

FOSTER CARE FOR CHILDREN AND ADULTS

WITH HANDICAPS:

Child Welfare and Adult Social Services

Final Report

Bradley K. Hill

K. Charlie Lakin

Angela R. Novak

Carolyn C. White

University of Minnesota

Center for Residential and Community Services

October 1987

Prepared for

Office of the Assistant Secretary for Planning and Evaluation

U.S. Department of Health and Human Services

Grant #90DD0051/2

This research was funded by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) as

a supplement to the National Study of Specialized Foster Care and Small Group Care Models of Long- Term Care for Persons with Developmental Disabilities, funded by the Administration on Developmental Disabilities (ADD) (Grant #90DD0051/2). Contractors undertaking such projects under government sponsorship are encouraged to express freely their professional judgment. Points of view or opinions stated in this report do not, therefor e, necessarily represent the official position of either ASPE or ADD.

TABLE OF CONTENTS

............................................ v I. INTRODUCTION........................................................................ ............................... 1 ..................................... 1 ........................................... 3 Previous Research........................................................................ .......................... 4 II. METHODOLOGY........................................................................ .............................. 7 Survey Design........................................................................ ................................. 7 Definitions and Limitations ........................................................................ .............. 8 III. FINDINGS........................................................................ ........................................ 11 Children's Foster Care ........................................................................ .................. 11 Adult Foster Care........................................................................ .......................... 33 Specialized Foster Care........................................................................ ................ 41

State-County Population Estimate ........................................................................

45
IV. DISCUSSION AND RECOMMENDATIONS........................................................... 49 ...................................... 53

APPENDICES

APPENDIX A. Definitions........................................................................ ............. 54

APPENDIX B. Type of Handicap by

Type of Foster Placement........................... 56 i

LIST OF TABLES

TABLE 1: Total Children in Foster Care by Type of Placement: 12/31/85 ............... 12 TABLE 2: Foster Children per 100,000 State Population Age 0 through 17 in 1985........................................................................ ............................. 13

TABLE 3: Handicapped Chil

dren in Foster Care by Type of Placement: ........................... 14

TABLE 4: Handicapped Chil

dren in Foster Care by Type of Handicap: ........................... 15 TABLE 5: Approximate Number of Children in Substitute Care: 1961 - 1985.......... 17

TABLE 6: Children in Foster Care: 1980 and 1985.................................................. 20

TABLE 7: Children's Foster Care: Management Information Systems..................... 23 TABLE 8: Children's Foster Care MIS: Types of Handicaps Recorded.................... 25 TABLE 9: Children's Foster Care MIS: Types of Placement.................................... 26

TABLE 10: Children's Foster Ca

re: Policies and Practices........................................ 27 TABLE 11: Existence of Adult Foster Care Programs Reported by State Social Services Offices........................................................................ .... 35 TABLE 12: Number of Adults in Social Services Foster Homes ................................ 36 TABLE 13: Adult Foster Care: Management Information Systems ............................ 37 TABLE 14: Adult Foster Care: Interagency Coordination........................................... 38 TABLE 15: Characteristics of Specialized Foster Care Homes and Group Homes: June 30, 1982........................................................................ ..... 43 TABLE 16: Foster Children and Adults Reported by Selected Counties: 1980 & 1985........................................................................ ............................. 46 TABLE 17: Foster Child Placement Rates by Size of County.................................... 48 TABLE B-1: Mentally Retarded Children in Foster Care by Type of Placement .......... 56 ii TABLE B-2: Emotionally Disturbed/Mentally Ill Foster Children by Type of ........................ 57 TABLE B-3: Specific Learning Disabled Foster Children by Type of Placement ......... 58 TABLE B-4: Hearing, Sight, or Speech Impaired Foster Children by Type of ........................ 59 TABLE B-5: Foster Children with Physical or Health Handicaps by Type of ........................ 60 TABLE B-6: Other/Multiple/Special Need/Uncategorized Handicap by Type of ........................ 61 iii Additional copies of this report may be obtained postage-paid for $10.00per

COPY payable to the University of Minnesota.

The recommended citation for this report is: Hill, B.K., Lakin, K.C., Novak, A.R., & White, C.C. (1987). Foster care for children and adults with handicaps: Child welfare and adult social services (Report No. 23). Minneapolis: University of Minnesota,

Department of Educational Psychology.

The University of Minnesota is committed to the policy that all persons shall have equal access to its programs, facilities, and employment without regard to race, creed, color, sex, national origin, or handicap. iv v

ABSTRACT

This report summarizes state-by-state data on the number of children and adults in foster homes administered by child welfare or social service agencies. As of December, 1985, there were approximately 261,000 children in out-of-home foster care, including 54,000 handicapped children, of whom 14,000 were mentally retarded. The total number of children in foster care on any one day has decreased onl y slightly since

1980, whereas the number of children reported to be mentally retarded decreased by

approximately 7,500 (35%) to 5.3% of all foster children. Specialized foster homes administered by state mental retardation agencies serve approximately 6,400 additional mentally retarded children and 10,700 mentally retarded adults. Adult social services foster care programs and data collection efforts regarding children and adults in foster care are also discussed. Many states gather and can report detailed data on both handicapped and nonhandicapped foster children. In other states, only counties can provide data on handicapped children. Data collection efforts would benefit form standardization of terminology used by states.

I. INTRODUCTION

Background

When natural families, for various reasons, cannot or will not provide adequate care for dependent family members, whether for reasons of dysfunction of the family unit, disability or delinquency of the family member, or other reasons, public agencies often assume the role of ensuring that the dependent individual will receive appropriate food, shelter, clothing, and nurturance. A number of specialized institutions have evolved over the decades to implement this public commitment. These include a variety of residential and nursing institutions, group homes, halfway houses and other facilities for persons with dependencies due to age or disability. A primary and extremely important setting for fulfilling the public commitment to dependent persons living outside their natural homes is foster care.

The most common use of foster care is

as a setting in which children's basic needs for food, shelter, clothing, and nurturance can be met at times when their natural families are unable to do so adequately. Public Law 96-272, the Adoption Assistance and Child Welfare Act of 1980, partly in response to a growing caution about the use of long term or repeated out-of-home foster care placements, established the concept of permanency planning for children as a national policy. A primary purpose of this Act was to promote a reduction in the number of children in foster care, reduce the duration of care, and improve preventative and family-based support services and case management to promote more stability in the lives of foster children. While it is difficult to obtain statistics that demonstrate the effects of the permanency planning effort, available statistics (discussed later in this report) suggest that although placement duration may have decreased somewhat, the number of children and youth in foster care at any one time did not change appreciably between 1980 and 1985. Foster care is also becoming increasingly important as a long-term placement for persons with disabilities. Although the foster care model of residential services to persons with disabilities gained considerable attention in t he first third of this century, interest waned from the early 1930s until the late 1960s. Since then, as greater stress has been placed on community integration and normalized lifestyles for persons with mental, physical and/or sensory impairments, there has been increasing attention on maintaining persons with disabilities in their natural homes or in the most home-like long-term care placement possible. Obviously in pursuit of this goal, foster care arrangements are particularly attractive. To examine the role and potential of foster care in responding to the long-term care needs of persons with disabilities, it is important to observe the administrative structure through which long-term care services are provided. The present study emphasizes services to persons with mental retardation/developmental disabilities, but analogies exist in services to other "disability groups" with long-term care needs. For 1 persons with mental retardation/developmental disabilities, the largest long-term care service system is operated, licensed, administered and funded by state departments or divisions of mental health or mental retardation and is primarily comprised of state institutions, large private institutions, relatively small group homes, and specialized foster homes. The state mental retardation residential service system serves approximately 250,000 persons, about 25% of whom are less than 22 years old. Foster homes specially licensed by state mental retardation agencies (referred to in this report as "specialized foster homes") served 6,400 children and youth (0-21 years) and 10,700 adults in 1982, an increase of almost 20% from 5 years earlier (while the total residential service system remained about the same size). The second largest system of long-term care for persons with developmental disabilities is made up of nursing homes and personal care homes, generally operated under the supervision of state departments of health. The most recent available data on placements in such facilities are provided by the 1977 National Nursing Home Surve y (NCHS, 1979). Its estimates indicated that among the 1,303,000 people in nursing homes in 1977 there were about 44,000 persons with a primary diagnosis of mental retardation or a diagnosis of epilepsy with mental retardation as additional handicap. The third system of long-term care, and the focus of the present study, is operated by state social service agencies. This substitute care is comprised of foster homes, group homes, and other types of residential facilities. Typically, this system is operated through county departments of social services, although some states administer foster care through regional offices. In this report, residential services provided by child welfare or adult social service systems will be referred to as generic foster care to differentiate them from the specialized foster care programs administered by state mental retardation, mental health, or other agencies focused on specific disability groups. According to an Office for Civil Rights Study (OCR, 1981) which will be discussed later in this report, about 267,000 children and youth, including 64,000 children and youth with handicaps, 21,000 of whom were mentally retarded, were in generic substitute care programs in 1980 (includes age birth to 17 years; excludes independent living). Foster care is generally considered to be a child welfare service, but in some states and counties adult foster care programs have also been established. Nearly two thirds of residents in specialized foster care programs administered by state mental retardation agencies a re adults. Many states have also established roster home programs for adults with mental illness and/or those who are elderly and/or disabled, although data on the number of persons mentally ill and elderly participating in foster care programs do not appear to be available. For the most part, both generic and specialized foster adult care programs for persons with disabilities rely on funding assistance available to participants through the Social Security Act (Supplemental Security Income, Social Security Disability Insurance, Medical Assistance), often supplemented by state programs. Under the Medicaid Home and Community-Based Services waiver, Title XIX funds are also being used to support the care, supervision and training provided to adults living in foster homes. Certainly cost is of major 2 importance as one looks to the future of foster care programs for persons with disabilities. In a recent (1986) sample of specialized foster care homes and small group homes (6 and fewer residents) for people with developmental disabilities, we found that foster care homes had an average daily cost of $23.03 versus $48.60 for small, licensed (but not ICF-MR certified) group homes. Numerous factors suggest greater utilization of foster care arrangements to meet the long-term care needs of people with disabilities in the future. Among the advantages of foster care are the more normal patterns of daily living they provide residents, their integration within the community and, of course, their low cost. Unfortunately, while data are increasingly available on the nature, size, and quality of specialized foster care programs, even the most basic statistics on generic foster care services are difficult to obtain. Among the most obvious reasons for this lack of comprehensive data is that generic foster care programs are operated by approximately 2,500 separate jurisdictions.

Purpose

This study was developed as a result of conversations held with staff of the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in 1985. At that time the Center for Residential and Community Services (CRCS) was reporting data from its 1982 national census study of residential services for persons with mental retardation. CRCS had also just been funded by the Administration on Developmental Disabilities to conduct a more detailed comparative study of representative samples of specially licensed foster care homes and small group care facilities (6 or fewer residents). The statistics on specialized foster care in the 1992 national census study, and the effort that CRCS was undertaking to expand its basic survey data with a comprehensive data set, brought indirect attention to the lack of similar data on the use of generic foster care for children and adults with developmental disabilities. At about the same time ASPE personnel were involved in a set of activities related to constructing a national foster care data base. Because of the complementary, if not overlapping roster care systems, a meeting was held with CRCS and ASPE staff members to discuss the use of these two models of foster care, particularly as they related to children and youth with disabilities. Within these discussions questions were raised about the extent to which generic foster care was being used to provide residential services to persons with mental retardation, the extent to which the generic and specialized systems served similar su bpopulations of persons with mental retardation, and the reasons for state variations in utilization of specialized and generic foster care models. These discussions focused on the availability of CRCS data on specialized foster care, the limited availability of data on generic foster care, and on related statistics regarding changing patterns of residential care for children and youth with handicaps. CRCS data, for example, revealed that the number of children and youth (0-21 years) in mental retardation facilities decreased dramatically between 1977 and 1982, from about 91,000 to 60,000. While CRCS staff argued that this change was probably attributable to the increased availability of public school programs and 3 community-based family support services for children and youth with handicaps, it was conceded that some portion of the change could have resulted from children, who at one time would have been placed in mental retardation facilities, entering child welfare (generic) foster care programs instead. While these discussions raised many questions of importance to policy evaluation and future direction, it was evident that there was relatively little information readily available with which to respond to them. Discussions therefore turned to how a modest survey effort could be carried out to assess the availability of basic generic foster care data and what kinds of procedures would be required to gather them from state and local agencies from which they might be available. To carry out an exploratory study of the generic foster care system and to gather statistics from states and selected counties, ASPE provided modest supplemental funding to the CRCS study of specially licensed foster care and small group homes. In addition to reporting on state systems with respect to persons with mental retardation and other developmental disabilities, ASPE staff members requested that information and available statistics also be gathered on children and youth with other handicaps in generic foster care, on nonhandicapped children and youth in generic foster care, and on adults with handicaps in generic foster care. The Center began gathering background data from states in late 1985, gathered data on the number of children in homes as of December 31, 1985 during the first half or 1986, and continued with follow-ups to states throughout 1986. Among the specific purposes of the study were the following: (1) to determine the different types of information gathered and aggregated by different states regarding persons with mental retardation, persons with other handicapping conditions, and persons without handicaps in generic foster care programs; (2) to gather information available from states on the nature of the handicapping conditions of individuals living in the generic foster care homes; (3) to determine changes in the number of total children and handicapped children in the generic foster care nationally (through comparison to previous surveys); and (4) to the extent that desired information was not readily obtainable, to suggest methods by which such data might be gathered in the future.

Previous Research

Since 1960 there have been several national surveys of children in generic foster care. Notably each employed a somewhat different methodology, used somewhat different inclusion criteria, and was operationalized with somewhat different definitions. These studies are briefly described in the following paragraphs. Jeter, 1961. Data in this 1961 survey of social services (Jeter, 1963) were based on a national sample of 49,838 case records (out of 377,000 children) receiving public social services and 12,368 (of an estimated 125,000) children receiving private social services. Of the total of 502,000 children (all but 700 were age 0-20), an estimated

233,440 were in foster care, excluding placements with parents or relatives (collected,

4 but not included here). This estimate included both public and private (voluntary) social service agencies. Seven percent of children receiving services were mentally retarded. Of all children in foster care, 6.7% were reported to be mentally retarded. Westat, 1977. The Westat study (Shyne & Schroeder, 1978), based on a national probability sample of 315 local agencies, included 9,597 case records of children less than 18 years in substitute care on a single day during the first quarter of calendar year 1977. This study included children in public or private care for whom the primary state child welfare agency had case management responsibility. Of 1,800,000 children receiving services, 503,000 were in substitute care, excluding those with parents, relatives, emergency shelter, or detention centers (reported separately). Mental retardation was reported for 4.7% of children, of whom between 28% (the proportion for all children) and 67% (the proportion for children with mental retardation as primary problem) were in foster care. OCR, 1980. The Office for Civil Rights study (OCR, 1981) was a national census that included 2,436 of 2,439 local child welfare agencies (mostly counties) in the U.S. 1 The survey gathered data on all children in the legal custody of child welfare agencies as of January 7, 1980, including the number of children by race, handicap, and type of placement. Children in various types of placements made by or under the supervision of each local child welfare agency numbered 301,943, including "independent living," defined by OCR to include placement with relatives; 267,000 excluding independent living. Of children and youth with mental retardation on agency caseloads, 59% were in foster care. Of all children in foster care, 24% were handicapped; 8% were mentally retarded. Maximus, 1982. The Maximus, Inc. study (1983) was a national probability survey of 167 child welfare agencies. Data were extracted from 4,225 case records of children less than 18 years old who were in substitute care on December 15, 1982. Of the estimated approximately 202,000 children in foster care, (not counting placement with parents, relatives, final adoptive parents, or independent living which were reported separately) 57,300 were estimated to be handicapped. For reporting handicapping conditions, defined in a case-specific questionnaire as "physical, psychological, or mental handicap," some agencies may have used their own "agency criteria" which varied widely and in some states included broad "special needs" categories. Over 60 percent of handicapped children were over II years old. Of the children in substitute care who were handicapped, over 60 percent had been in care for more than two years, as compared with only 38 percent of nonhandicapped children.

Almost 30 percent of all ch

ildren with handicaps were living in either group homes or institutions, while only 13 percent of children without handicaps lived in group homes or institutions. There was virtually no difference in the racial distribution between handicapped and non-handicapped children. 1

In one state, Oklahoma, the state agency provided statewide data. In all other states, each county reported

individually. 5 VCIS, 1982 and 1983. In 1982, the American Public Welfare Association implemented the Voluntary Cooperative Information Systems (VCIS) to collect annual information about children less than 21 years old in substitute and adoptive care. For fiscal years 1982 and 1983, respectively, primary child welfare agencies in 48 and all 50 states and DC responded with aggregated information on out-of-home placements. although not all states responded to all items. The VCIS reports indicated that 21.1% of the children in fiscal year 1982 and 22.3% in 1983 were reported to have one or more disabling conditions (Tatara & Pettiford, 1983,1985). Types of disabling conditions and the types of placements in which handicapped children lived were not reported. In the studies outlined above, as well as in the present study, there have been problems in defining "foster care" (e.g., should children in detention homes be included; should children placed with relatives be included), in defining types of foster care placement (e.g., foster family home, foster group home), and in defining types of handicaps (e.g., what is a "special need"). While efforts were made in the present study to use definitions that permit comparison to earlier data, and indeed even contemporaneous comparison among states, some incongruencies remain. Even when decisions are made with respect to what should be considered to be foster care, it becomes readily apparent that some states have difficulty providing estimates of the total number of children in various types of substitute care, much less the number of children with handicaps. In summary, then, the survey attempted to identify and structure as best it could the contemporary organization and status of data systems on children and youth in foster care, including children and youth with various handicaps. It encountered many problems in attempting to rectify state data systems and their various data elements and operational definitions. Despite these problems, existing state data bases have quality with contemporary utility and which, with modest modifications, could provide even more useful statistics to inform foster care policy. This report, in addition to tabulations of the statistics gathered as part of the survey, discusses areas in which promise exists for enhanced, policy-relevant foster care data collection without undertaking major agency surv eys such as those identified earlier in this report. 6

II. METHODOLOGY

A series of surveys were carried out in order to understand state policies on generic foster care use, to identify and gather current statistics available from states, and to examine alternatives for cost effective, ongoing collection of basic foster carequotesdbs_dbs14.pdfusesText_20

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